This is the story of my "journey" dealing with cancer, learning how to walk again after losing my hip to the disease and the everyday battles of learning how to cope and live being disabled and a Christian. Follow my STEPS OF FAITH.

Tuesday, January 29, 2013

Mom went home to California at the beginning of April 2009. It was hard for both of us to say goodbye after 6 months of her living with me and the previous months having lived at home during recovery. But, life began to take on a feel of normal again with me going to work during the day and hanging with my friends or at home at night. I would talk to my family every couple of days so they knew everything was alright with me.

Opened ceiling with water damage.

I was home one weekend watching television in my recliner, when I began hearing a steady drip of water. Sometimes I could hear someone in the apartment above me taking a shower and it did sound like dripping water, so I didn't think too much of it. When the sound kept up for quite some time, I started to check out my apartment to see if it was in my place. I checked the kitchen to see if by some odd chance I left the faucet running slowly. No, that wasn't it. I checked the laundry closet to see if the washer was leaking. No, it wasn't that either. Then I went to my master bathroom thinking maybe the toilet was still running since I have had problems with that as of late. Bingo, that was the room where the water was running, but it wasn't the toilet or the sink. Above the bathtub the ceiling was not just leaking, but running water.

This place was a mess!

Water bubble under the paint on the wall.

The doctors had given me restrictions on how far I could bend over and how much movement I could have with my right leg since surgery. I was only able to move my leg forward and backward at a 50 degree ratio. From side to side, I could only go 30 degrees. So, with these limitations in place, it was difficult for me to bend over with towels to mop up the floor. I was totally impossible for me to get down on my hands and knees to do it either.

So, here I am with water rushing into my bathroom and there is nothing I can do to clean any of it up. I called my apartment managers emergency line for maintenance, I ended up having to leave a message. An hour later I received a call from the guy who was on-call for maintenance saying he would be over sometime later to take a look at it. I expressed the urgency of the situation to him in hopes he would come over much quicker. By the time he arrived, my floor was soaking wet and still dripping water from the ceiling. The water on the floor was spreading toward the door which leads to the closets of my bedroom. The best he could do at the time was poke a hole in my ceiling and put a bucket under the stream of water. That did a lot of good, NOT!

Paint bubble removed.

A couple of days later, he came back to my place and ripped a large hole in my ceiling and paint off my wall behind my toilet. He wanted to "air out the wood" in the ceiling before "patching" it up. He wasn't completely sure of the source yet, but he did know that it was coming from the third floor as the second floor was wet from their ceiling as well. The office was going to call in the construction company that had restored and remodeled the second and third floors from the fire in January. Who knew when they would come and take a look.

A few more days went by and I still had a gaping hole in my ceiling with wet wood. The dripping had stopped by now, but the majority of the damage had already taken place. My bathroom smelled old and musty now.

When the construction company finally came to my place, they took one look (10 seconds) and assessed that they needed to completely remove the water by using an industrial strength dehumidifier. This thing took up about half the walking space in the bathroom and was so stinking loud that even with the doors closed I had to turn up the volume on my living room t.v.

For several days I lived with the dehumidifiers blasting day and night. I lost sleep over the noise. The apartment was so hot and dry from pulling out all of the moisture. I was just about as miserable as my poor bathroom looked. Finally, I called the office manager of the complex and talked with her about the noise and my lack of sleep. She called the construction company and they suggested leaving them off at night, but having them running all during the day. That would be great since I'm at work during the day. Wish they had told me that several days ago before I lost sleep!

Oh well, I can move passed this too.

After two weeks had passed from the ceiling beginning its dripping, the wood and drywall had finally dried out. It took the construction company another 3 weeks to patch up my wall and ceiling so it looked like it had before. It was nice to have my bathroom getting back in order.

It has seemed like there is nothing but a trial after another trial since I found out about the cancer in my hip. You ask the Lord when this roller coaster ride is going to slow down enough to jump off. Or, if it is going to stop at all and let you off. But, you don't really get an answer loud and clear. So, you just keep plugging away moment by moment waiting for any little sign that will signal that you are on the right track to make it back to the starting gate at the right time.

Next..."Airplanes, Weddings and Mother's Day."

Reflection:

"Wait on the Lord; Be of good courage, And He shall strengthen your heart; Wait, I say, on the Lord!" Psalm 27:14

Friday, January 25, 2013

As we delve back into my story, I will probably still continue to intertwine the events of today in as we journey through. Some of the past is extremely important to understand better the how's and why's of today. Please bear with me through the process. Journey's can take funny twists and turns, hills and valleys now and then anyhow, right?

We left off last time in March of 2009 where I had the remaining wisdom teeth removed. That was a painful ordeal. But, as I was sleeping off the pain, the blessing of the side rails for the Jeep was taking place. They worked wonders for the length of time I had the Jeep. They were great.

Following my oral surgery, I went back to my physical therapy sessions with Mark Deysher. The work he did with me was incredible. We used pilates machines to work on strengthening each leg independently. We worked on balance using various methods of trampolines and standing on disks. We used an old fashioned standing leg press along with a rotating disk which not only worked on balance but coordination. This was all great stuff and was making it possible for me to become my own person again. And that was nothing but a good thing.

By the end of March he had me walking on the treadmill for warm ups before doing strength and core training. I never thought after a surgery like I had, and the doctors saying I may never walk again, that I would be walking on a treadmill. How cool is that?

Being an independent person, when you have to rely on others to help you cook, clean, etc., it feels as though you have lost something very important. It is kind of like my posts back in 2009 where I talked about "Taking It For Granted - 1" and "Taking It For Granted - 2." The every day things we do in our lives, we don't really think about until for some reason we cannot do them anymore. It feels like losing a part of yourself that you just can't seem to get back. And, when you do begin to regain some of what you lost the world doesn't seem to be against you anymore. That is why taking on the treadmill was such an important time in my therapy.

While mom and I still had a little time left before she felt I was ready to be on my own, we would take weekend trips to different places around Colorado. One weekend it was Red Rocks, Golden (where Coors beer is made) and a little trek into the mountains. The next weekend it was lunch or dinner in Denver. We just had fun where ever we went so mom could see more of the state of Colorado.

Thursday, January 24, 2013

After getting back from California just before New Year's, both mom and I felt very optimistic that the Lord was working out His plan to alleviate my pain. The phone call from Dr. Wong had been completely unexpected as last we had talked, there was nothing he could do with radiation therapy. My medical oncologist and surgeon were both banking on the change in my oral chemotherapy to do the trick for the cancer on the tailbone.

So, as we began our life back in Colorado after New Year's, the first couple of days back to work seemed normal. By the end of that week, however, I began feeling nauseous and my stomach was churning a lot. Friday of that week I stayed home and slept the day away. I began feeling a little better that evening, but not enough to do anything over the weekend.

When I woke up Saturday morning, I was worse than I had been the day before. Oops, I had the flu for sure. In my physical condition, making it to the restroom was not an option. So, mom rigged a bag for me in case something came up all of a sudden. And boy it did. After several bouts that morning, my stomach wasn't feeling that great and I was down for the count for the weekend. Monday came and I was better. I went to work and felt semi okay for the day. Tuesday morning came and I was down again.

Wednesday and Thursday I went to work but took it really easy. When Friday came along, I was back in bed full time for the weekend yet again. That Monday, I took off work, as did my supervisor who had caught the bug too. We both made it through the rest of that week. But, again Saturday I was down for the count. This was going on three weeks and things were not getting better. I had been to Emergicare and my own doctor. The best I was able to get was an anti-nauseous pill and cultures to see if maybe something else was going on because it was too sporadic to be a continuation of the flu.

So, now we are waiting for the cultures to come back, but I have been to work all week. Recently, I wrote about my unexpected phone call and that I was waiting to hear if I made it through pre-screening. I received an email from my doctor asking when would be a good time to call and chat.

I received his call Wednesday morning. The company that does the pre-screening for this new procedure said that my metal back fusion and my metal hip replacements on either side (but mainly the right) make it nearly impossible for them to get a clear ultrasound stream to the location of the tailbone with the cancer, so they declined doing this procedure at all. What a let down.

Well, here we are again at square one wondering what to do about the pain as the pain meds are still not effective enough to make me comfortable.

My greatest fear (concern) is that my pain will continue to worsen and that I will not be able to sit in my specialized chair at work any longer and I would have to give up my job. I love what I do, and the thought of having to give it up because the cancer is in spot that conventional treatments cannot touch is disheartening and ridiculous. I am tired from being in pain ALL the time. I do not know what more can I do? I feel I have down more than enough to find some relief.

However, mom and I have a couple more off the beaten path treatments to hunt down before we give up completely. These may not be covered by insurance and are in locations where we would have to pay for room and board. The cost is prohibitive, but we will try anyhow. I cannot keep going on in pain like this. It is not quality life with this pain. And, I do feel a little let down by the doctors. Mom felt set aside as though the pain was nothing they really cared to deal with.

We will see what the next steps are with these other out-of-the-box treatments we are looking into. Keep thinking good thoughts and praying we find the right doctor with the right determination to fix this pain and get me back to a quality life.

Next..."Let's go back to 2009 and pick up the story again..."

Reflection:"Let your gentleness be evident to all. The Lord is near.Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:5-7So, I am trusting that by presenting my requests to God, He will not only hear me, but will give me peace and guard my heart and mind.Question:Are you struggling with a situation or circumstance that seems hopeless and has gone on far too long? If you can, share what that is with us here. I would love to be able to stand with you in prayer that God would be your peace and guard your heart and mind. You can be anonymous too if you do not feel comfortable leaving your name. You can also email me directly at sfraz7@gmail.com.Peace and Grace to you all!

Wednesday, January 23, 2013

I have heard from some of you looking for answers on the unexpected phone call. I guess it was a cliff-hanger with this title. So you all aren't sitting on the edge of your seats, here we go...

As mom and I began our trek back to Colorado, I had an important task to complete for my job before we could get much further than the Starbucks down the street from our house. So, needless to say, we got a pretty late start with my needing to work in the car sitting outside Starbucks.

While I worked on the task that needed to be done ASAP, mom went into Starbucks and bought a couple of coffees and a bottle of water for the road. She also decided to make a pit stop, just in case. By the time mom dilly-dallied around and got back with the coffees and water, I was finished with the task I needed to get done before hitting the road. So, mom put the computer back in it's case and we hit the road.

It wasn't long after being on the road before we transferred to our third California freeway. As we rounded the curve of the interchange from the 55 to the 91, my cell phone rang with a number I knew was the City of Hope hospital. I quickly thought it may be the office calling to reschedule my next appointment with my medical oncologist, or that my surgeon's nurse was calling to see how I was doing after rehab. I never dreamed it would have been my radiation oncologist after we had learned from him that radiation therapy was NOT a viable option.

Dr. Wong started off the conversation noting that he had called my parents house first and my dad had given him my cell phone number to call. He then advised me that he had just returned from a seminar where he learned about a new procedure which was just approved by the FDA for use with cancer patients and City of Hope was approved to administer this new procedure.

He began to explain bits and pieces of this treatment plan. Some of which I was comprehending and some of which was above my head at this time. I was caught off guard by the whole phone call as we were leaving town, I didn't know if this was something that I wanted to participate in or not. Dr. Wong asked me what my thoughts were. I had to ask him if I could get some information about this procedure to review so I would know if it was something I was interested in exploring. Immediately he emailed me two documents on the procedure for my review. I had two weeks to give him an answer on if I wanted to explore this further or not.

The information provided was not a whole lot more than what the doctor had already given me over the phone. There were some things which concerned me about the procedure and my family and I had a lot of questions before we could commit to wanting to do this. It seemed promising and risky at the same time.

This procedure is called MR guided Focused Ultrasound (MRgFUS). So basically, by the doctors using an MRI to position a patient and the ultrasound on a low dose to begin with, the doctor can make sure the ultrasound is in the correct location and begin the lengthy treatment. This procedure has been used in many other countries with great results for various ailments including some cancers, pain relief and fibroids where traditional radiation therapy cannot be used.

This procedure uses energy that is generated by an ultrasound source and where the rays of the ultrasound are focused at a specific point in the body to create a significant heating at this focus that is much higher than anywhere else. In plain English, the ultrasound it targeted to a specific spot in the body and will elevate the temperature of that area only for a period of time killing the tissue in that area only. Pain should be gone within two days of the treatment. The treatment could be anywhere from 3-6 hours. This is a type of surgery now available without the use of a knife or a prolonged stay in the hospital. This is treated as an outpatient surgery.

If I pass the pre-screening portion of this (waiting to hear from the doctor now), I will need to have my questions answered by the doctor so I can make my decision if I want to go through with this or not. It certainly sounds promising when I thought there was no hope at all to get better! I know that as I wait on the Lord and follow what I believe is His direction, things will eventually turn around for the good.

Next..."Flu, Flu, Flu and more Flu"

Reflection:"but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31

Sunday, January 20, 2013

Since being out of rehab, I have been enduring in-home physical therapy. Honestly, this can be just as brutal (if not more so) as in-patient therapy. The therapists have to be as creative as possible to make in-home therapy work. Everyone's home is different and there may not be enough space to do some of the exercises. On the other hand, you may have plenty of places that supply the therapist with a plethora of options to torture you, I mean work with you, no...I really mean TORTURE you.

In my case, I have plenty of places for the therapist to torture me.

The trade-off? I have already progressed back to crutches. Each day my strength gets better and better. My endurance, however, is another issue. After so much time in bed from the fracture and then surgery, my endurance is shot. Little by little, as we work three times a week, my endurance is slowly getting better. I have been able to do our normal walking routine without having to take a break part way through. This is a huge answer to prayer for me to get to this point.

If therapy wasn't enough to get through, there are side effects to the new cancer drug. The side effects got so bad for me, I had to go off the drug for five days to let my body recover over Thanksgiving weekend (not much to give thanks for then, I was miserable). Once I got back on the drug, the doctor had decided to drop the dose by one pill a day. Since we altered the dose that way, the side effects waned. It's amazing that one pill can make a difference between feeling okay and feeling as though the world is coming to an end just for me.

I also had been waiting to meet with the radiation oncologist to see if/when we can begin a radiation therapy on my tailbone. That one spot of cancer seems to cause me the most severe and constant pain, along with the ongoing pain from my right leg and prosthetic. No amount of pain medication has been able to touch that area long enough to be considered relief by any stretch of the imagination. Anyhow, unfortunately after finally meeting with the radiation oncologist he advised radiation was NOT an option due to the location of the tumor.

This was very disappointing to hear. After all the things we have tried, my pain is getting worse and the increase of prescription drug dosages is not helping.

Because of this news, mom and I left CA two days after Christmas heading back to CO. We have to stop several times along the way because I can only sit for so long. So, we stay a couple of nights in hotels along the way. By the time we get home, I still hurt bad enough that I need a couple of days to recuperate from the traveling. This time, mom and I had 4 nights home before I had to go back to work. I must say that even the 4 days did not help this time. My first day back still hurt me pretty bad.

To this day, I am still having issues with the pain at fairly great levels.

Next..."An Unexpected Phone Call"

Reflection:"But those who suffer he delivers in their suffering; he speaks to them in their affliction." Job 36:15

Thursday, January 3, 2013

Family, Friends and those who are following me because a friend referred you, I apologize for yet another long period of time without writing. Since November, I have been mentally and spiritually assaulted. What exactly does that mean?

Well, for me it means that I just can't stop crying. Every time I try to write about my story or the current events of my medical time in California now, I can't get past a couple of words before my heart sinks and my eyes well up with tears. Even now as I attempt to talk about it here with you now, I am choking up. I have been so strong in the Lord for so many years, that I can hardly believe that I feel so broken and alone right now. Why is that?

My take on it is that I have to go back a little and remember to completely rely on the Lord. At some point, I stopped fully relying on Him and forgot Who it is that has sustained me for all this time.

I know that means it is time to get back to my grass roots and put my complete faith and trust in the Lord and not rely on my own understanding.

Proverbs 3:5 "Trust in the Lord with all your heart, And lean not on your own understanding;"

If even for a short time, it is good to remember where your strength REALLY comes from.